Table 1 Recommendations derived from the literature
From: Pain points in parents’ interactions with newborn screening systems: a qualitative study
Recommendation | Reference |
|---|---|
– Parents should be informed of results from a known clinician | |
– Care should be taken with leaving voicemail messages and sending letters informing individuals of positive NBS results without clear follow-up directions | |
– The nature of the disease should be explained adequately | [6] |
– Parents should be connected with families experiencing the same condition | [6] |
– Care should be taken in establishing rapport with parents before relaying a positive result | [6] |
– Advising parents that test results are likely to be false positives is undesirable. Precise percentages should be used to convey risk | [6] |
– Avoid downplaying the severity and clinical significance of the disease | [6] |
– If clinicians are unable to answer questions, then parents should be provided with educational materials while awaiting an initial appointment or consultation with an expert | [6] |
– Provide test results and counseling to all parents (not just the birth mother) | [13] |
– Provide parents with educational materials related to the disorder | [17] |
– Provide educational materials in minority languages | [17] |
– Provide education regarding the NBS program in the third trimester (i.e. not at delivery when parents are overwhelmed) | [17] |